Friday, August 23, 2013

11 Months & Counting... ...

Today is a milestone day. 11 Months ago I woke up, drove down to Boston, registered for the Hub on Wheels event, biking along fundraising and did not make it past the 15th mile. That being said, today is great. I am 6 feet over.

Had my second optometry appointment. At my first they were shocked to find one of my stygmytism's completely gone. However they could see the damage to my brain in my right eye. The right eye works fine however it has changed. So much so that my optometrist, God bless her soul, scheduled a visual field test. Under the auspices that my Neurologist would want it done.

Now, to be fair, I have not been seen by a Neurologist on a regular basis.... at all. In fact, I was the one that setup my oncoming appointment with Dr. Somyreddy on my own. My wife would have happily done these things but she has to work. Her schedule is not easy to work around and I don't want her to give up her career, which she has worked hard on having, for my sake for any reason at all. So, in adjustment, I have become my own case worker.

Today's test was an "Automated perimetry exam". In my humble opinion people should have one of these done just so that they a: know the experience when it becomes neccessary and b: so that if there is any thing going on it is discovered early. I was so afraid that I was screwing things up, during the exam, that I was scared I'd screw everything up.

I didn't.

There is clear signs of brain injury in the scan. My right optical nerve has not just swollen up around the connection point. It has taken on a weired shape. There is possibly some slight damage as well but it could also be the very early (earliest) onset of gluacoma. The doctor and I agree, this is most likely caused by the swelling of my brain.

The outcome is workable, the results very favorable. In fact, the results will substantiate a problem I have been dealing with just nobody beleive's (or understands) me.

I SEE everything.

My vision, baring age, is nigh onto being perfect. I see everything that moves around me, evertything. That creates a problem for me as my cognition is extremely active as well. I am overloaded with information, I always have been and my mental capabilities match my visual capabilities.

I almost always know when to run, first. I know when to attack, first. In fact, I see everything but my memory is very spotty now. In fact, I took the test just a couple of hours ago and I can just barely describe the experience. That quickly things just disappear... fading away.

In fact, I had a goal in my mind when I thought of doing this blog. That goal has faded away and I am struggling to stay mentally awake enough to type. So I'm just going to end with Good Afternoon while I trundle off to have a nap.

Good afternoon.

Wednesday, August 21, 2013

The Volunteer Spirit Lives On... ...

A very good friend of mine recently posed me an extremely valid question. How is my Volunteer spirit doing in light of my condition? Very good question as I am really really starting to learn that I am not who I was. However finding out who I am, now, is very confusing.

As an example, I attended my church's Outreach Comittee meeting. Our job seems simple, help to focus the Volunteer/Charitable spirit of the church into various productive activities. For instance, the Dover Children's Home or, the St Bernard Project or, Dover Friendly Kitchen or, helping End 68 Hours of Hunger or, on and on and on. The Volunteer Spirit thrives on at St John's United Methodist Church.

The only one of these projects I have not been deeply involved with is St Bernard's. I was supposed to go out on one of the mission trips however taking a year off for recovery has interrupted the plans. In fact, my recovery has interferred with many of these projects. Or at least my capacity in them.

So once again, How is my condition affecting my Volunteer spirit?

I don't know.

For instance, one of the topics was the Crop Walk. It is coming up and needs to be planned for, like all things. However the emotional distress I felt came from the 2012 Crop Walk in Dover N.H. Note the date of that walk. It happened almost one (1) month, to the date, after my accident. I was just coming out of Coma then. What's that got to do with anything? I was my church's project leader for the Crop Walk. I went to meetings, did drives, got people fired up to come out and walk. Turns out I had to spend my time learning how to swallow food again instead.

So, instead of facing the discussion on the Crop Walk (which I couldn't) I stated that I want to be involved however with my memory skills so spotty that I could not lead the project again. Not really surprising though. Before my accident I was tapped to be the Chairperson of the Outreach Committee. Even after my accident, the Church Council voted on approving my Chairperson-ship. A wonderful man was ready to "assist" me in chairing the council however I resigned my chair in favor of him. (He is not entirely grateful ;-))

Why? Well I am honored and flattered at the gesture. It was not an empty one, not at all. I know the heart of my fellow christians and they have been beside me through recovery every step of the way. It was the flattered feeling that made me realize something. The position is not about Ego. Granted there is a lot of work and planning that needs to be done however the truth is that my skills are not up to snuff in that regard. For Heaven's sake I would not want anyone out there to suffer simply because I forget to schedule discussion. Added to which, I was less than three (3) months injured when the honor was bestowed upon me. I typed my resignation with such poinency and dignity that it was reluctantly accepted, at three (3) months!

That is an important aspect, this Friday, the 23rd of August, makes my recovery at just eleven (11) months. And I can clearly state that I am not sufficient to the task now. In fact, I realized that I was insufficient for many of the tasks that we discussed.

Not insufficient mentally or emotionally. Sadly socially is my weakness. Not just my sometimes "quirky" behaviors either. Just from the barrier that exists in the collective mind that is Society. School program? I've passed background checks many times, nothing of note here. Oh wait, he's brain injured. Down Check.

I could list out all the down checks I see in my future but I don't want to cry tonight. I am already having a bad day, why make it worse?

That brings me to my trouble as a Christian. I wrangle with anger, a lot, but it is not at my accident. Or not primarily focused at my accident. I can not begin to tell you how much of myself I used to repress. I used to be very very careful in expressing opinion. And ideas, shucks I became so skilled at planting ideas that many of them don't remotely have my name attached. But that's okay, just as long as good work gets done, who cares about credit?

The sad truth of this world is that no good deed goes unpunished. That I used to take within stride, after all that was just part of the sacrifice that a good soul faces. Facing it straight on just makes you a Brave soul as well. However, I used to be sufficient enough to protect my wife from such aggravations. No more, in fact today was dominated by the actions of a nefarious neighbor.

Such is life. And such is my repeated prayer, "HELP".

Friday, August 9, 2013

I Don't Need Support, But Yes I do.

I am coming to the realization that I don't need support but maybe I do.

I am very very self actualized.

  • I drive. I remember routes and can make very fine use of Google Maps. I have a Tom-Tom sitting on my desk rarely used becuase my pathfinding skills are far better then the most excellent GPS guide can ever hope to be.
  • I handyman. I know all to well the safety hazzards of powered equipment and the necessary precautions needed to keep my own, and someone else's, limbs attached and unchanged. I've used a hammer, square, level, and knife to help construct things. In fact the new Dover building for End 68 Hours of Hunger has a roof on it that I helped put the beams in place. And I did it only 4 months after the accident when I couldn't balance myself on one foot but I could climb, safely, a scaffold and help direct a crane to place the Roof timber in place while someone else used the nail gun to lock it down.
  • I am again a computer geek. While I have not tested the full extent of my old abilities, yet, I have reset my network. A network not from Comcast or ATT or any of the other data providers as I don't have confidence in what is being offered to the general public. My network handles all the data traffic in my house and some outside my house.
  • If you visit my house you will have to ask me for the "guest" password. The guest network is not limited mind you, you can use it very well outside of my house. However signal degradation is designed to be STRONG out front of my house and beside my house. Coverage is good behind my house but only be there if permitted and invited.
  • Can't be positive what might happen to an uninvited "guest" sitting around behind me house. Anything might, my backyard has deer, coyotes, and (rumoured) a couple of black beers. Additionally the Somersworth public schools are against part of my back property so, it should go without saying, that the occasional Police Officer is yet another random creature that haunts the area. If those weren't enough, the owner of the property (and the wifi) is an indentified sufferer of PTSD Combat Veteran who doesn't need a gun, at all.
  • I am a show producer. With my creative side being unlocked from the old social/psychological restraints that once constrained it I have been working on an Audio/Visual show. I was recently (a few weeks ago) interviewed on "Don't Dis My Ability." That experience got my brain percolating, very much. Sitting there with Lee & Ali made me realize that I am as capable as I strive to be. Ron, bless his soul, showed me that there are doors I can open but only if I want to open them.

  •  I DO.
My creative side expresses itself in many ways. I'm working on my home, spent so much time building and fixing other people's homes but at the expense of time on my new (to me) home. If this is where my wife & I live.... let it be lived in! Also, I carry a Canon digital camera around with me everywhere. If something beautiful enters my view, >snap<. If something dramatic happens, >snap<. If a car driver acts without regard to law or life, >video<.
I have a really large collection of photos just from my walking around my neighborhood. I remember 13th and West Moreland (Philly) without any need for visual assistance. I am now learning my local area. Maybe not as well but then I haven't lived here as many years as I grew up in Philly.

Some of the above facets of me have started coming together into one interesting package. Using my computer skills I have started learning how to record Audio & Video from with here, at my desk. I have also started learning how to be a backroom producer massaging those tracks into one combined track. I have also learned how to use YouTube to deseminate the product. However YouTube has limits imposed on it by highly intelligent jackoffs so I am seeking YouTube alternative(s). was on avenue but to register a show is so much work. Heck, even their webinterface for doing so is broken, I mean fill out everything on the form but when you go to upload a sample of your show >plink<. Their server just doesn't work and they have no mechanism to report trouble. So I am going to have to plan out something. I have an idea but it is going to take a fair bit of work.

And my mind is filled with many many many ideas. There are so many possible shows I can do, so much video I have used my Camera (And Cellphones) to record, so many things I see that just doesn't make sense - opinioning is the fair thing to call it though I see the solution(s) as plain & obvious. The show may have me acting like "Sheldon" more than just a few times but come on people stop taking the state motto so carelessly. 

I mean, as a Combat Veteran, I watch these people who I put my life on the line for so casually tossing trash out the window desecrating this wonderful country - that if stopped they will scream their defense of it. Then they will revup their engines, cutoff a line of traffic to get on the highway, and light up a cigeratte so that they have a butt to toss out of the window onto the country they will say they'd defend with their obviously unwanted lives.

Yes, I need Support. I am not crazy, not at all. How I used to handle being so different from the :Common Conventions" was my personal assistant. He would keep track of appointments, resources, and upcoming agendas. He would guide me around social situations with the care that people can be landmines. One wrong step, >boom<. The wrong >boom< can activate the entire minefield at once. And this has happened to me at Church (before his accident) or at the Lodge (after his death).

Yes, my personal assistant died. We are approacing the first year anniversary of his demise and I am finding myself struggling without him. In fact, the tears have just started flowing down my face. I never really told him how much I loved him, how much I needed him, and how much his help meant to me.

So, yeah, I do need Support. To replace my ever present notepad that would remember that I slipped my ATM card onto my driver side visor. That is before I searched for it, then cancelled it, and sat down in the drivers seat for a half an hour .... then noticing the card. Yes, I need a personal assistant with memory better than mine. 

The accident, which injured me & killed him, victimized me. If I let it my injuries could make me "walking wounded" to draw the attention of our least desirable elements. Not that they would succeed, oh no, however my PTSD as a Philly Ghetto survivor might make my responses something to be regretted. That is an interesting aspect of my PTSD.

Doctors keep wanting to go back to my military service when, in truth, my service flashbacks are totally non-violent. Yes, someone could get hurt from them but it would be me. From a heart attack when the flashback hits I go through so much fear and shock that my blood pressure goes through the roof. (I practice Tai-Chi and Yoga to help my blood pressure standards.)

My mean streak was long before the military got me at 18 yrs old. It was started as a young white boy growing up in the black ghettos of Philadelphia. I've survived so many fights and attacks that the experience will never leave me. In fact, the experience is part of what makes me seem "odd" if you meet me in person. So many people are guided by what they see that they greet me warmly without realizing one plain truth that explains why I seem so different: I might be your "skinfolk" but I am not your "kinfolk".

Now, this does not mean I am angry. Not at all. Just that I have had to learn how to interact with White Culture as an adult. However, culturally I am a black man with an annoying white skin condition.

Yeah, I maybe self actualized but am I??


(PS: The calvary link is accurate however I served in the 2nd Squadron out at Sabre Airfield. It is not on Ft. Campbell, just a touch outside of Campbell.)

Wednesday, August 7, 2013

Was I So Wrong. That Day Just Grew Until It Hit My Fan!!!!

From:    <censored>
To:, Restore Manager <>,
Subject:     Re: Hello from an Old Hand

On 19-Jun-2013 09:36, wrote:
> ReStore Assistant Manager

I am sorry I called you, it must have been by surprise. Again, my deepest apologies.

Apparently my visiting just as a "customer" rang someone else's bell. I got someone from Habitat, from an Albany number, calling me and talking to me quite viciously about my inappropriate behaviors. Very profession in language, yes, but she was not talking to me, she was telling me how life is going to go regardless of the fact that I pulled over onto the side of the road to take the call.

Yes, I am upset by this but what has me the most upset was this woman's barking at me no matter how I tried to get her to stop and just talk to me. Emotional distress, being barked at so viciously has been the number 1 cause of seizures. So, I would like to thank the lady for her efforts. Now I know just how much grief and harassment I can endure all at one time. After Traumatic Brain Injury, you don't know or trust how much verbal and emotional abuse you can take.

I was then able to breathe, relax, and go into AAA in Somersworth and ask for a driver's assessment test. After all, I am an inappropriate trouble maker who may suddenly become mentally unstable. Add to which I am a member of Mensa, St John's Outreach Committee (I was voted in as Chairman!), a Freemason of Moses Paul Lodge #96, a volunteer (active) at the Dover Children's Home & End 68 Hours of Hunger (one of the timber rafters on their new building? A used a hammer and square to get someone else to nailgun it into place!).  If all of the above did not matter in the least, I am a combat veteran (of Desert Storm) who served in 101st Airborne.

Perhaps that might, at the end, explain why I am enjoying cosplay of Fallout 3. After all, the main hero in that game was born and raised in Vault "101". But that only makes sense if you don't consider me mentally unstable.

PS: I am quite mentally alert! I only verbalize myself slowly so my Aphasia doesn't pop out. But just because I talk with extreme care means nothing to the mind that is exercising extreme care. Or, as I have learned by working IT with ESL professionals, "broken English does not mean broken mind". Only the shallow and the mean spirited of heart assumes that.

CC: Sophie (who did not even say hi before this all banged out at me), Jonathan T.M. Reckford CEO of Habitat International, Jeremiah Turner (Community Desk Reporter of Foster's Daily Democrat)
"Q" F. & A.M.
h: 603->Censored<
c: 215->Censored<

Monday, August 5, 2013

Work It Baby, Work It Hard!!!

I can not begin to talk about how I wound up here. Let me try to lead you through and see if you get to the same place I am at.

First, I visit the Krempels Center. There I was taught several things at once.

  • A: You are not who you were, be who you are!
  • B: The box is not your limits. Don't just think outside the box, thrive!!
  • C: Standard answers work for standard people. I am not, nor was I ever, standard!!!

Then I met "Ron". Ron is support for Greg. Greg is a vibrant vivacious fellow who will be dealing with brain injury for the rest of his life. And what life Greg lives! Greg is always stretching out yesterday's boundaries with today's actions. I thought to myself, if I can just be a fraction of the man Greg is, I'm doing pretty darn good!

Ron had me on his radio show "Don't Dis My Ability". WSCA is a community sponsored radio station staffed by nothing but volunteers. Given my volunteering experience being on the show was, in part, kind of like my old self. Not that I had ever been on the radio before and I've only once been interviewed by a journalist, by email! (Eon Magazine - as Shar Tegral)

Well as I was filling out the volunteer form Nacole, a brain injured D.J., asked me what genre of show I was going to do. I shrugged that off because I was only interested in helping out... ... but her question got my brain percolating. Oh my yes, percolating indeed!

I then figured out what Genre I would do if I did a show. I started planning the show, even did a home video, to share with WSCA management as a demo when >bing< I realized I just did a show. All on my own. No one hovering over me, no one restraining or coddling me, just me. As D.J., as cameraman, as writer, and as producer. Not that I did not need anyone, oh my yes I need some people around, but I did not need any hand outs. I've have contacted my Sisters and a few friends, seeking a hand up, but other than that...

I'm playing with various applications, being an old IT geek, and I am having fun! I have been satisfying sides of my creativity that I knew existed just did not have the time for before my TBI. Now I have plenty of time, I just need to balance my creativity versus my need as a self-case worker.

Thursday, August 1, 2013

Why, why, why?

I keep telling everyone that "what" is the important question for me. What is without debate, it is with argument, it just is. "Why" is vastly much more problematic. Why leads to what people feel, what they think, and what the will get angry about. Why is the basis for much discord and as a Mason, as a TBI sufferer, discord is very unpleasant.

I am me but not me.

This would require me to explain "why" which I may not be able to properly do. "What" is easy, I am a totally married purple hearted combat veteran mensan who happens to be a mason that practices his religion at a United Methodist church. <whew> That is not 100% but one person can only do so much at any one given point of time.

Now to dig into "why". I said totally married, not happily married. Before today I would like to have said happily but at this moment I am not happy. My wife, bless her soul, is trying to deal with my injury but without support. No one to talk out her experience or problems dealing with my TBI. Her solution is to treat everything I do with extreme caution.... almost to the point of disinterest.

I make myself so busy, trying to keep my extremely active mind engaged. However what I have to go through to share my current life with my current wife is on the outer edges of my endurance and capabilities. No matter how much I try I seem to annoy her with my "need for attention". I would like to say that I am much more salient then I was in the past however the most important person, outside of myself, this matters to does not realize this.

I am afraid.

What I am trying to do, the things I am involved with, hopefully will last longer than me. Given the weight of my life, I know for a fact how transient my life really really is. But should something happen to me I would like for these changes to continue. My wife's level of interest is causing me to develop founderitis. In a normal person, this is not healthy. For me, with my condition, this can be life altering pain and turmoil.

Talking about it to her could be a solution yet when I make any observation about her she takes it personally. Positive observations are treated like pranks or jokes if I'm lucky. Negative ones are treated like general judgement against her the core of her soul.

I don't know what to do. I love my wife, oh God do I love my wife. But I am feeling that my life would be better if I was more disabled. Even needier than I really am. At this moment I am being lashed by my Gov't, by my charitable drives, and now by my wife.


I would really like to know. What is so different about me that makes me vulnerable to such behaviors. These could not have been happening before my accident. I am not shy, if these were happening I would have said something. So what make Brain Injury so horrible that I am finding myself in such horrible position.